When I phoned 000, I pleaded for Grant to go straight to his new hospital rather than stopping at the hospital, which was last year going to euthanise him. Although I have no final say in the decision (the ambulance officers do), my wish was granted.

Two ambulances arrived to pick Grant up. The normal vanilla one and the special MICA one. Because Grant was so unstable, we chucked him in the MICA.

On the way decided to give Grant a whiff of Midazolam, injection. He technically shouldn't have this without having Zoffrin (anti nausea drug) with it, as the Midaz, has always caused vomiting. However, it was important to give him a break from the seizures. He got half the normal dose, and then about 15 minutes later got the other half.

He did calm down a little, but certainly he was not out of the cyclic seizures. Upon arrival to the emergency department we only had to wait about 8 minutes before he was taken in to casualty. I was not initally allowed to go in with him to the emergency room! This has never happened before in his old hospital. I will have to follow this up with the new neuro, to see if I can always go straight in to the casualty ward with Grant.

Grant was promptly seen by a senior doctor. After about 20 minutes I was allowed to go and see him.

Blood was taken and for some totally unknown reason, his Dilantin was low! I suspect that although we give Grant his DIlantin dose each day, because Grant has such a slow gastric motility, sometimes the Dilantin doesn't hit the spot. Absolutely nothing can be done about that. (Incidentally, Dilantin on it's own really doesn't do much to control the seizures at all).

Grant was now given a loading dose of Dilantin. He was also given the Zoffrin, and then he was given some Midaz, via the nose.

His blood pressure did come down a bit. His pulse has not been too high. The tonic/clonics did reduce in frequency and and intensity.

For the first hour or so in casualty, the nurses were very attentive. I spoke to two different doctors. They are following very closely the protocol that has been written up by Grant's new neuro.

Grant had a chest xray. I do not believe that he has aspirated. They are now under instructions to give more Midaz, only if the seizure/ lasts more than 30 seconds. This seems a bit harsh, but really it is sensible. Filling Grant up with Midaz, is going to compromise his airways. However, in the protocol, a titration (is that the term) of midaz is written up if the situation becomes more serious.

Grant is now waiting to be treansferred hopefully to the neuro ward, but there is not a bed available there.

I mentioned the suspicious possible haematoma in Grant's right hip area. Grant's new neurologist is very keen on this being looked at by the ortho team. Hopefully, while Grant is in hospital, they will look at his leg.

The only frustrating thing today, is that I did not take the Mick-Key button flushing tubes. The hospital did not have access to the tubes, because it was after hours. I needed to come home to get the tubes, so that Grant could have his 9.pm meds, (Dilantin, Frisium, Vimpat, Losec). It would be easy to get all worked up about this, but the remedy really is to make sure that whenever Grant goes to his new hospital, we take the Mick-Key buttong flushing tubes. And, yes, they contacted just about every ward in the hospital to see if anyone had the tubes. They didn't.

Alison and I came home at 3.34 am. We are both zonked. Grant is in safe hands (God is watching over him, and there are warring and ministering angels present). The doctors and nurses are doing the right thing.

SUMMARY.

God is good. We sing and shout it :) I believe that by following the protocol (getting Grant to hospital as quickly as possible), we have averted a major crisis.

Grant has been moved to the neurology ward. He is still having frequent large jerks, lasting a few seconds. He has not yet been re-evaluated by the neurology team, but will be soon. The dietician is connecting him up for his grub.

which is very high dependence = 3 nurses to 4 patients. This is great as everyone is keeping an eye on him.

When we went in to see him, he was much calmer than earlier on when admitted to casualty. He was/is still having lots of jerks (myoclonic or tonic/clonics?) which last for only a few seconds. In between the jerks, he is quite aert.

Grant has slept almost all day after having been awake for about 36 hours with seizures and myoclonic jerks almost out of control.

Grant is no longer on oxygen. While he slept he was rock solid. At about 5.pm he started to wake up and become more alert. He has become a bit 'shuddery' during the day. This is very much what we would call 'normal', before the incredible stable period that he has had since April.

The hospital pharmacist came and discussed Grant's medication. What I found amusing and quite revealing is that she had never heard of Paraldehyde! But that is not so amazing really, given that Grant was the only patient in his previous hospital on the medication for controlling the bad tonic/clonic seizures. The pharmacist was very thorough. She phone the manufacturer interstate to get some information on the drug.

The ortho surgeon who spoke to me on the phone last night visited again. He looked at the ultrasound and report and the CCT xray and report on Grant's dicey right leg, hip area. He felt that there was nothing specific to do as it was very unlikely that further tests would be beneficial as they would not want to operate. I said that We would really like to know if there is a problem, such as cancer etc. He said that he would speak to the senior surgeon today and get back to me.

The senior surgeon with his team came in today and looked at the hip. He suggested that a muscle biopsy via ultrasound would reveal what is going on. So one of the doctors wandered off to do the paperwork.

I ALMOST MUCKED UP

The doctor came back wtih a consent form for me to sign, and just as I was about to sign it I realised 'hang on a minute', I have to get the joint medical guardian's consent for the operation. So I gave the doctor the joint medical guardian's phone number and they had a chat. The actual joint medical guardian is not contactable until Monday, unless in an emergency (this is not considered an emergency)

The person the doctor spoke to was so supportive of Grant that is really quite touching. She said to the doctor that Grant had been through so much in his life, that she didn't think it would be appropriate to have him undergo a biopsy, unless it was absolutely essential for him. I was quite touched by what she said. The doctor tol me this and took me aside and sat with me at the doctor/nurses station. He was very, very caring :)

He said that he had read Grant's history and realised what a hard time Grant had had. He said that he would quite happily arrange for the needle biospy, once a decision was made. He was happy to hold the bed until Monday (Grant would stay in hospital) so that a decision could be made by then. I felt that for Grant to stay in hospital until Monday when he could come home earlier, would not be a good idea.

So, for now the needle muscle biopsy is on hold, until further clarification regarding what is best. I will speak with the joint medical guardian on Monday. I will also correspond with Grant's neurologist.

Grant has not had a bowel movement since Tuesday mid-morning (It is now Thursday evening). We must not under any circusmtances let Grant get conspitapted, becuase that could increase seizure activity. It could also result in Grant needing a catheter, as last time Grant got constipated (in January at the rehab centre), he needed to have a catheter because he was not weeing!

So, I asked the head nurse to make sure that Grant had Movicol tonight, to clean out his bowels.

I hope that Grant is stable again and will remain stable for a long time.

It's great to hear that everyone involved in Grant's care is treating all of you with respect and compassion. While you all went through a harrowing ordeal and were separated during it, the end result seems to be an improvement in Grant's medical care. I'm so grateful for all of you that you are moving forward in a positive direction.

I re-read your posts here, and you answered my question about Grant's leg.

I have some suggestions for you ~

Mic-Key Tubes:

Since it's likely that Grant will be returning to that hospital if he is ill/in crisis, perhaps you could ask the hospital to stock a supply of these tubes, ready for any future visit. I doubt that it would be a large capital outlay, and they would be available for Grant or any other patients, who might need them. They can stash them in the pharmacy.

Ready To Go Bag:

We have a bag in Jon's closet with: prefilled syringes of his meds; bottles of water; cups; a 60 cc syringe; colostomy and trache supplies.

Of course, the hospital does have all of these things, but waiting to get them can be eternal. So, if we are stuck in ER for a long time, I can just get on with Jon's care. I always get permission from the docs to give Jon's meds from home, of course. When we wait for the pharmacy to bring up the meds, it can take hours, and then Jon is off of his schedule.

I also have a printed fact sheet, which provides all of the details of Jon's medical history (diagnoses; medications/doses; surgeries/dates; allergies; height, weight, etc.; appliances (trache, colostomy, catheter, rod/pin in leg); insurance policy #; home phone/address. I have 4 copies in the bag: 1 copy for the paramedics; 1 copy for the EMT/ambulance guys; 1 copy for the ER; 1 extra.

This saves me repeating all of this information, and it allows the responders to just copy the information on to their forms. And while they are doing that, instead of telling them the information, I can be with Jonathan, talking to the guys about his condition and guiding his transfer to the gurney/ER bed.

Every one of the paramedics, EMTs, and ER nurses LOVE me for doing this. It makes their jobs far easier. Last time, as the paramedic stood copying the information on to his form, he said to me, "I wish that everyone would do this." I suggested that he train folks to do it ~ just offer it up to family members of chronically ill people as an idea. I think people would discover how helpful it is for them as well as the responders.

Constipation/Urination:

We are giving Jon prune juice as needed every day. Warm prune juice, about 9 oz. It is helping Jon with his BM's, and we've decreased the need for Milk of Magnesia (which I recommend as the first option for treating constipation, as it is an older, tried and true and less harsh remedy than some other laxatives).

Jon's home health nurse recommended that we increase Jon's cranberry juice to twice a day, which we've done. Cranberry juice keeps the bladder acidic, which helps to prevent infection as well as stimulate urine production. It is working for Jon. Perhaps it would be beneficial to Grant.

Dilantin:

Based upon my 28 years of experience with this drug, I would offer for your consideration that maybe Dilantin is helping to control Grant's seizures more than you think it is. Since Grant was stable for quite awhile, then suddenly started seizing, and the Dilantin level was low, then it's possible that the lowered Dilantin level contributed to the seizing.

Was Grant's blood test for Dilantin level taken as a trough ~ right before his dose? This is an important factor in assessing absorption of the drug. We always take trough levels, and we try to schedule the blood draw at the same time every time it is drawn.

Dilantin peaks in the blood stream after about 4 hours. A blood draw at that point would reveal the maximum level in the blood stream. If that level is low, then that needs to be calculated into the equation for dosage adjustment.

Ideally, both trough and peak levels should be taken, but I've never known a doc who did this. I have to beg for levels most of the time, because docs don't see their meaning, as well as I do.

But because of that repeated testing, I have learned that Jon's ideal level on Dilantin is 12. Anything lower, and we get into seizure territory.

It might be worth it to have Grant's Dilantin level rechecked, particularly if you have increased the dosage. Then, keep track of his levels, so that you can discern his therapeutic range.

If Jon gets to 16, he starts becoming toxic. So it is helpful to us to know his level periodically to better manage his care and prevent seizures.

If Grant gets Dilantin once a day, you might also want to consider cutting his dose in half and giving it every 12 hours for better, longer coverage. We give Jon's meds every 8 hours, so that he's never troughing for too long.

I hope that Grant is stable again and will remain stable for a long time.

So do we.

It's great to hear that everyone involved in Grant's care is treating all of you with respect and compassion. While you all went through a harrowing ordeal and were separated during it, the end result seems to be an improvement in Grant's medical care. I'm so grateful for all of you that you are moving forward in a positive direction.

I re-read your posts here, and you answered my question about Grant's leg.

I have some suggestions for you ~

Mic-Key Tubes:

Since it's likely that Grant will be returning to that hospital if he is ill/in crisis, perhaps you could ask the hospital to stock a supply of these tubes, ready for any future visit. I doubt that it would be a large capital outlay, and they would be available for Grant or any other patients, who might need them. They can stash them in the pharmacy.

During the daytime it is easy to get the Mic-Key tubes. It was our mistake though not to have taken a couple wih us. I will follow up though to see if it is possible for them to keep a supply.

Ready To Go Bag:

We have a bag in Jon's closet with: prefilled syringes of his meds; bottles of water; cups; a 60 cc syringe; colostomy and trache supplies.

Of course, the hospital does have all of these things, but waiting to get them can be eternal. So, if we are stuck in ER for a long time, I can just get on with Jon's care. I always get permission from the docs to give Jon's meds from home, of course. When we wait for the pharmacy to bring up the meds, it can take hours, and then Jon is off of his schedule.

To be honest, a Ready To Go Bag, is really not that necessary. Grant is only on 3 drugs. We will of course next time, if there is a next time, make sure that we take the flushing tubing and some Jevity.

I also have a printed fact sheet, which provides all of the details of Jon's medical history (diagnoses; medications/doses; surgeries/dates; allergies; height, weight, etc.; appliances (trache, colostomy, catheter, rod/pin in leg); insurance policy #; home phone/address. I have 4 copies in the bag: 1 copy for the paramedics; 1 copy for the EMT/ambulance guys; 1 copy for the ER; 1 extra.

We and the hospital do have the 4 page plan, which is quite thorough regarding drugs that Grant is on, drug allergies etc, etc. However, we probably should have a sheet ready for the ambulance officers, because it is easy to forget all the drugs that Grant has bad reactions with.

This saves me repeating all of this information, and it allows the responders to just copy the information on to their forms. And while they are doing that, instead of telling them the information, I can be with Jonathan, talking to the guys about his condition and guiding his transfer to the gurney/ER bed.

Every one of the paramedics, EMTs, and ER nurses LOVE me for doing this. It makes their jobs far easier. Last time, as the paramedic stood copying the information on to his form, he said to me, "I wish that everyone would do this." I suggested that he train folks to do it ~ just offer it up to family members of chronically ill people as an idea. I think people would discover how helpful it is for them as well as the responders.

Constipation/Urination:

We are giving Jon prune juice as needed every day. Warm prune juice, about 9 oz. It is helping Jon with his BM's, and we've decreased the need for Milk of Magnesia (which I recommend as the first option for treating constipation, as it is an older, tried and true and less harsh remedy than some other laxatives).

With Grant's breakfast he gets All Bran, which should get him moving again. He shouldn't really go more than 2 days without a bowel movement. But once he is back on his 2 wholesome meals a day, we assume that his bowels will be okay.

Jon's home health nurse recommended that we increase Jon's cranberry juice to twice a day, which we've done. Cranberry juice keeps the bladder acidic, which helps to prevent infection as well as stimulate urine production. It is working for Jon. Perhaps it would be beneficial to Grant.

Hmm. Where do you get your Cranberry juice? The Cranberry juice at the Supermarket seems to me to be very diluted and full of sugar!

Dilantin:

Based upon my 28 years of experience with this drug, I would offer for your consideration that maybe Dilantin is helping to control Grant's seizures more than you think it is. Since Grant was stable for quite awhile, then suddenly started seizing, and the Dilantin level was low, then it's possible that the lowered Dilantin level contributed to the seizing.

Was Grant's blood test for Dilantin level taken as a trough ~ right before his dose? This is an important factor in assessing absorption of the drug. We always take trough levels, and we try to schedule the blood draw at the same time every time it is drawn.

The last test for Dilantin that Grant had 4 weeks ago which showed normal was taken about 12 hours after his last dose. The rule at home is for him to have his last dose in the evening at about 9.pm. Then we get him to pathology and they take blood. This might be anywhere from 11.am to about 1.pm for taking blood.

Dilantin peaks in the blood stream after about 4 hours. A blood draw at that point would reveal the maximum level in the blood stream. If that level is low, then that needs to be calculated into the equation for dosage adjustment.

Ideally, both trough and peak levels should be taken, but I've never known a doc who did this. I have to beg for levels most of the time, because docs don't see their meaning, as well as I do.

But because of that repeated testing, I have learned that Jon's ideal level on Dilantin is 12. Anything lower, and we get into seizure territory.

It might be worth it to have Grant's Dilantin level rechecked, particularly if you have increased the dosage. Then, keep track of his levels, so that you can discern his therapeutic range.

The dosage is still the same. Good idea about having the level rechecked.

If Jon gets to 16, he starts becoming toxic. So it is helpful to us to know his level periodically to better manage his care and prevent seizures.

If Grant gets Dilantin once a day, you might also want to consider cutting his dose in half and giving it every 12 hours for better, longer coverage. We give Jon's meds every 8 hours, so that he's never troughing for too long.

We buy organic Just Cranberry juice from a grocery chain focused on healthy foods. It is JUST cranberry, literally. No other juices and no sugars added.

Another idea might be for you to buy cranberries (perhaps frozen) and put them through the VitaMix. Add them to his meals. However, fruit juice is usually best given on its own about an hour before any food is given.

If Grant is constipated, I do recommend the warm prune juice (which you could add to meals or give separately). It does work. I would give it in addition to the bran, if Grant is backed up. But daily prune juice might just help him become regular, which would improve his metabolism.

And I do encourage you to recheck Grant's Dilantin level, and probably check it at least 4 times a year. Grant has been on it long enough now to need it, to where his body needs it, and depends upon it, which is why a low level could precipitate a seizure. It's just that kind of drug, which is why it is so difficult to wean off of it. Sadly.

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